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Wendy Blumenthal, MPH

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  1. Improving Mortality Reporting to State Cancer Registries through National Vital Statistics System Modernization Efforts Wendy Blumenthal, MPH Health Scientist NAACCR Annual Conference 2019 June 12, 2019

  2. Background • Centers for Disease Control and Prevention (CDC) National Center for Health Statistics (NCHS) maintains the National Vital Statistics System (NVSS) to assist in monitoring the Nation’s health by having states report birth and deaths to NCHS • NCHS project to improve timeliness and quality of death reporting • Focus on use of Application Programming Interfaces (APIs) to facilitate data exchange • Major component of NCHS-wide initiative to improve quality of NVSS • Cancer registries rely on Vital Records data to inform survival analyses and case-finding

  3. Project Purpose and Description • CDC National Program of Cancer Registries (NPCR) is partnering with NCHS to enable automation of electronic exchange of mortality data between state Electronic Death Registration Systems (EDRS) and state cancer registries • State cancer registries will be able to receive mortality reports electronically within two days of the State Vital Records Office receiving a coded death certificate to: • improve timely death information for existing records • improve timely identification of records that require follow-back activities • NPCR is working with NCHS, Vital Records Offices, and cancer registries in 14 states participating in NCHS’ implementation project • Will develop a single standard for format, content and transmission of coded death records to state cancer registries, using the Health Level Seven (HL7) Fast Healthcare Interoperability Resources (FHIR) standard

  4. Vital Records Data • Inform survival analyses and case-finding • Issues • Delayed access to death certificates • Differing record layouts and codes • Potential loss of critical information available as literal text • Potential solutions • Death certificate information converted to NAACCR Record Layout • Certificates automatically transmitted to cancer registry

  5. Delayed Access • Linkage generally conducted annually • Some cancer registries linking more frequently • Access 12-18 months later • Patient records archived • Information not available for follow back activities • Sources less likely to retrieve information

  6. Record Layout and Codes • Recode information according to cancer registry layout • Sex • Death certificate – text • Cancer registry – code • Format file to conduct linkage

  7. Critical Literal Text • Potential loss of critical information available as literal text • Cause of Death • Cancer primary site • Cancer morphology (cell type) • Tumor behavior (benign/malignant) • Approximate interval: Onset to Death • Date of cancer diagnosis

  8. Potential Solutions

  9. Steps to Interoperability • Interoperability = ability of a system to work with or use parts of another system • Identified potential approaches to enhance interoperability • Mappingdeath certificate to NAACCR record layout • Identified appropriate NAACCR data items • Used HL7 FHIR standard • Applied Natural Language Processing to literal text

  10. Steps to Interoperability • Developed proof of concept • Created cancer registry record • Automatically transmitted file

  11. Benefits • Opportunity to define best practices • Automated file creation and transmission • Efficiency gains in timeliness and quality • Ultimately reduces workload • Facilitates electronic record linkage • Electronic record directly imported into registry database • CDC-developed tools available • Early identification of vital status and potentially missed cases • Improved death information timeliness for survival analyses • Improved access to information before record archived • Scalable to other programs

  12. Considerations • May require change in operations • Primarily for cancer program • May require cancer to conduct additional year-end re-linkage of non-matched records • May require system development if other approaches used

  13. Next Steps • Web-based meeting with participating cancer registries and vital records offices to: • review current status and planned approach • demonstrate proof of concept • obtain feedback on how well the technical solutions are aligned with current workflows and forward looking goals • learn about processes and requirements of participating programs • Complete mapping for all NAACCR data elements • NPCR will work with NCHS team to develop FHIR standard for mortality record reporting to cancer registries • Test and implement mortality record reporting, building on proof of concept and feedback from meeting, in participating states

  14. Acknowledgements Reda Wilson (CDC) H. Mac McCraw (CDC) Paula Braun (CDC) Peter Krautscheid (MITRE Corporation) Jon Duke (Georgia Tech Research Institute)